I hope you will check out the latest article I had published about living with schizophrenia. It is at the OC87 Recovery Diaries.
I am going back to work. I wanted to have writing and working from home be my new career, and I have taken many writing classes and applied to many home-based jobs, but it just hasn’t panned out for me. I don’t feel productive enough working from home, and getting paid writing gigs is competitive and requires a fire and hustle that I simply don’t have.
For the past year, along with writing, I have been applying for part time jobs that I thought I would enjoy and that I had a high chance of being successful doing. I finally found one. I am scheduled for my new employee orientation next Wednesday.
I am excited to go back to work. I will be working twenty hours a week at a fast paced job that is physical. I’m happy that it is physical because it is less likely for anxiety to grab ahold of me when I am zipping around trying to complete tasks.
There are many reasons I am happy to have landed a part-time job with a well-known company, and one of the most important reasons is advocacy. I feel like I am strong enough to work part time and I think that strength and accomplishment are important for others to see. I have worked outside of the home almost all of my adult life (with the exception of the last five years), and I think it will prove to people that stereotypes about schizophrenia are simply not accurate.
I want to succeed at my new job not just for me, but for everyone with a severe mental illness. I don’t want my success to be exceptional, though; I want everyone to know that many people with schizophrenia can write, attend school, and work (some can even work full time although I am sure I can no longer handle the stress or pressure of a 30-45 hour work week).
I have been dealing with personality tests, drug tests, background checks, and other details of this new job over the past two weeks and I have noticed that as the likelihood that I would get the job increased, I became more and more self-confident. Earlier this week, I took a bus by myself to a resort and outlet mall thirty or more miles from my home. I went and spent several hours having fun. It took me two buses to return home, and I did all of that without incident. I was so proud of myself and felt a sense of freedom and accomplishment.
When I was younger, I was so much more independent, fearless, and adventurous. I have lost a great deal of my confidence and strength over the past five years, and I feel like working will help me gain some of that back. Although I have written dozens and dozens of published essays over the past few years, I don’t feel as if I have been contributing or productive on a level that I desire. With a part-time job, I will feel certain that every week I have been productive and contributed to a team environment accomplishing many tasks each shift.
My biggest challenge with returning to work is going to be managing my symptoms, and I feel hopeful that I have the skills and resources to make it through a 4-5 hour shift four days a week. I feel ready to take on the challenge.
As I get ready to start punching a time clock, it is important for me to remember that I am not giving up my dream of writing essays and having those essays published. I am still going to have a couple of free days (down days) every week, and if I can get organized and use my time wisely, I will still be able to produce as much writing as I have been over these past few years.
I am embarking on a new journey, and I intend to keep you all posted about the rough waters, easy sailing, and the direction of the wind. I have the courage to get out there and try again. This trying is an example of the tremendous resiliency of many of us with a mental illness; we do more than put one foot in front of the other, we make huge leaps and hope that we will land in a better spot than the one we left behind.
Last night I was binge watching old episodes of Blue Bloods. My husband and I have always enjoyed the cop show mostly because of its focus on family. I don’t think either one of us will see it the same way again after the writers created a man with schizophrenia who had killed a young girl’s family but became stable (and remorseful) in prison after taking medication.
I can’t tell you how many times a very similar character or killer is part of the story on Criminal Minds, and other detective/cop shows. Will Hollywood never tire of the killer with schizophrenia?
In every beginning writing class students are urged to avoid stereotypes because they make writers look lazy and ignorant. Apparently, writers for Hollywood haven’t received the Composition 101 memo, or they think writing in a killer with schizophrenia is just too appealing to the general public to leave it out. I doubt the latter; It’s simply bad writing done by people who refuse to spend ten minutes researching the statistics regarding people with schizophrenia and instead turn to an old and tired story.
I can’t help but think that if the same writers created a stereotypical character from another minority, there would be some outrage on the part of the public (at least I hope so). But with mental illness, and particularly schizophrenia, the outrage seems to be limited to a few blogs and occasionally one of the larger mental health non-profits will have their members write letters.
How would I like people with schizophrenia to be portrayed? Realistically of course and that requires talking to people who have the disease and asking about their symptoms. Do they hear voices? Do they hear voices continuously or only sometimes? Do they suffer from delusions? If they experience paranoia, how does it manifest in their everyday life? What other symptoms do they have, and how do they manage those symptoms?
I have encountered dozens of people with schizophrenia and schizoaffective disorder, and they can all answer the questions that I just listed. In the disability community there is a saying, “Nothing about us, without us,” and that is how I feel about schizophrenia. If people want to write about it, that is great, but hopefully, they will care enough to do some research to make sure their characters aren’t just the same old stereotypes that are written about frequently now and over the past few decades.
It would be admirable if a few writers would like to do some good, and find out what living with a severe mental illness is like and how difficult it can be without trying to live with the views that they have reinforced over and over again by making us out to be dangerous killers.
We can all agree the pen is a mighty instrument that can be used for the good of others or to harm others. I hope that someday soon in Hollywood, the writers of popular shows will decide to help eradicate stereotypes about schizophrenia rather than perpetuate them. I can only think of one story where the hero has schizophrenia, and it was a blockbuster. The movie is, “Beautiful Mind.”
The success of “Beautiful Mind” should be an indicator that the public is hungry for a different narrative where mental illness is concerned. And the old cliche that says, “there is nothing new under the sun” simply isn’t true especially regarding characters with schizophrenia.
I have been applying for jobs that I think I would be able to do for the past year. One of the things about me is I always want to contribute. I worked up until five years ago. Since that time I have been trying to take classes and become retrained as a writer so I can build a freelancing career. I even went to culinary school and graduate school but couldn’t (for different reasons) keep up with either one.
On days when I can seriously self-reflect, I know that a freelance career or a work from home opportunity is all I can manage. In the morning, after I take my medications I frequently become so groggy and tired that I need to crawl back into bed and sleep for thirty minutes to an hour. There are days when I call my husband and ask him to come home from work. It is a good thing that he works so hard and has a good relationship with his boss.
One of the things I try to do to build a freelancing career is attend writing conferences and network with editors. I try to build these relationships on social media as well. My husband always goes to the conferences with me, and it is a good thing because we haven’t been to a single one where I didn’t run into problems with my symptoms.
If I made an appointment with you at ten in the morning to meet at Starbucks, you probably wouldn’t realize that I have schizophrenia (that is if I didn’t have to cancel or wasn’t experiencing anxiety). Many people see me for short periods of time and don’t realize that I have a severe mental illness. I am capable of having a conversation, and I laugh a lot when people possess a sense of humor.
One reason my illness isn’t always easy to detect (with the exception of anxiety and paranoia) is because I have been practicing hiding it for over twenty years. I don’t like people to see my symptoms.
The strange thing I am trying to express by writing all of this is that I have a desire to be well. I think I am capable of more than I am. I have a desire not to have schizophrenia. I think I have an illusion (delusion) of myself at times that convinces me that I don’t have schizophrenia at all even though I am always adamant about taking my medications (a constant reminder that I am ill).
It is hard to describe having clear enough thoughts to write these essays or to write anything, but in the same day be so paranoid that I need my husband to come home from work to help me. Those two worlds, my healthy world, and my symptom-filled world, don’t sit well side by side. The side of me that writes these essays thinks that I can achieve anything, and all I need to do is try hard enough or get the right breaks. The mentally ill part of me requires more medication, help from my husband or others, and keeps me from really being successful at anything (because no matter what I think I can do, I can’t control the daily symptoms).
I guess that is my brand of schizophrenia in a nutshell – a woman full of possibilities and ideas that she can’t reasonably achieve because her symptoms pop up unexpectedly and demand all the attention.
It is hard to admit that you are limited in your potential. It is hard to admit that the very part of your body that occasionally creates original and interesting sentences can turn into your enemy.
I don’t feel sorry for myself, but acceptance is a life-long process and one where I feel my progress is not linear but more like forward and backward and off the path all together like when I apply for a job that there is no way in the world I would be able to handle. Is that hope? Is that delusion? Is that magical thinking? Is that over-confidence, or is that the result of schizophrenia and the reality of my illness playing hide and seek with me?
It’s hard to have a disease of the brain because even in healthy people the brain can play tricks on you, and in mentally ill people you can’t always tell the tricks from reality it’s like watching a magic show by a master magician.
So many people say they have magic or synchronicity or coincidence in their life. Maybe they mention fairy dust or mermaids. I call it all God. All those wonderful moments when you know the currents of electricity or the moon or tides or whatever have aligned in your favor and everything works out. It’s a mystery; those moments, those miracles are God for me, magic for you, amazing for all.
I had a writing mentor, but he passed away a year ago last April. I was heartbroken by the loss. He was a very successful writer and poet and extremely well loved. He was the first writer that I had met that believed in my work since I had returned to writing after a twenty-year hiatus. (The story of why I didn’t write all those years is sad, and I think I have shared it here on more than one occasion).
Steve not only told me what he didn’t like about my work; he told me what he thought was good about it. He wrote essays for me to get into graduate school to study poetry (and I got into both of the schools that received his essays). I knew that he was serious about what he said about my writing because he published some of my poetry in two different publications where he worked as an editor.
Sometime after Steve’s death, I hired a writing coach to help me write my memoir. I worked with the coach for many months before deciding I wasn’t ready or didn’t want to write my memoir. I have a serious problem with motivation which is a symptom of schizophrenia that gets harder to live with over the years. I stopped scheduling appointments with my coach.
I missed having the support of a mentor, an editor, a cheerleader and a friend.
On the one year anniversary of Steve’s death, I was at AWP16, the largest writing conference in the United States. Before attending the conference, I found out that a writer who I had traveled to Flagstaff Arizona to see (at another writer’s conference), was auctioning off a package of her writing services for a year. I looked at the schedule, and there were two other things I wanted to attend (actually, I needed to attend) booked at the same time as the party where the auction was scheduled. I was devastated, but then I discovered that I could bid in advance and not be required to attend the party.
My husband and I talked about how much we could afford to pay for me to work with this writer for a year. We decided to put the absolute highest amount we thought we could afford so that I would have a better chance at winning the auction. (At that time, I didn’t know that I could contact this writer and work with her. I thought the auction was my only chance).
The day of the auction I ran into a poetry professor who knew Steve and knew how much he meant to me. I told this professor that I had tried but been unable to find someone who filled those holes and gave direction to my writing life. Tears welled up in my eyes, and I felt the tremendous loss of such an advocate, teacher, mentor, and friend.
It was the day after the anniversary of Steve’s death when I was sitting in a disability panel as a representative of writers with a mental illness when I got the text. Mine was the winning bid at the auction. I nearly screamed out my excitement in that auditorium. I let my hands go over my head and pumped the air above.
Elizabeth Gilbert wrote a book, Big Magic; the book is about living a creative life. She writes a lot about those moments, those incidents when everything in the universe seems to be working toward a single goal that manifests itself before you, or in you, or around you.
I still miss Steve every time I write a new essay, or have an article published, but I believe in an afterlife and the continuation of spirit and energy. And I think he would have delighted in the fact that Anna and I connected. In fact, I think he arranged it.
I don’t usually talk about my faith or politics here. I have strong feelings about both, but this blog has never been about that. So, if you are uninterested in issues of faith, then skip my latest article on Patheos: No Matter How Smart They Think They Are, Atheists Don’t Shake My Faith. If you have an interest, pop over there and let me know what you think – either way, I hope you are healthy in body and mind.
Yesterday while I was on Facebook, a picture of a man dressed all in tinfoil popped up in my newsfeed. Above the picture a friend of mine wrote, “There sure is a huge population of unmedicated paranoid schizophrenics in this world–sadly, with the Internet, and social media, they now feed each others’ delusions. Maybe I’m just paranoid?”
When I first saw this post, it stung. The man who wrote the post is gay, and common sense would say that a person who belongs to a stigmatized and oppressed group would have sympathy and empathy for another group of people who face some of the same challenges.
In the black community, some people use the word “woke” or “staywoke” to mean being aware of the issues in the community. The word or phrase has recently become popular across the Internet and with teenagers. Although the original meaning had to do with racial issues, it has now morphed into meaning staying aware of social issues. An interesting progression of the use of the word or phrase is in Fusion.
I don’t think that I am “woke” about all social issues. I don’t always catch a racist situation on television or in other media. I am not the person who can point to every gender stereotype in a movie or book. I’m not always up to date on the issues that still put the LGBTQ community at risk of discrimination. The point is I try, though. I care about all people and their civil rights and their right to live and shop and be safe without harassment. I believe in liberty and justice for all.
How do I try? I listen. I read. I read books from people who are a part of these oppressed communities. I actively seek friends on social media that have different experiences than I do. I watch what they post. I read articles that are important to them. I try to become increasingly more educated, sensitive and aware.
I am not perfect, and I don’t expect anyone else to be perfect. I ask for patience from the people who belong to communities where I don’t yet know all of the correct language or all of the meaningful events happening that directly affect them. I am slow, but I am trying.
What I want to ask people from these various communities, and groups is, are you giving equal effort to others who face discrimination that you hope people give to you?
If you only care about the issues that affect you personally, don’t attack those who don’t care about the injustices you face, because that is hypocritical. It’s all of us or none of us.
I would love to earn the badge of “woke” by a community I stand up for and stand beside but am not necessarily a member. I would love to give out the badge of “woke” to people who get it about mental illnesses and champion our cause. Some of you are on my list of recipients. I hope more people will want to earn that honor.
- Update: The person who posted the offensive comment and picture on Facebook has made a very public and formal apology. One more person, one more step closer to being woke. We can all help change the world one heart and mind at a time. Ready? GO!
My husband suffers so much disappointment due to my illness, but he would never say that, or even show it. I know and can see that it is true, though. When we first met, I would drive from Seattle to Los Angeles by myself to visit him. I haven’t driven a car in the last eight months. My husband and friends drive, or I take the bus or walk whenever I have to go out.
Cupcakes and humor.
When we first started dating, I would fly (even overseas) by myself. Now, when we travel we have to plan the trip around certain times of day (less anxiety), and we have to pack and prepare in ways to try to make the trip as pleasant and as smooth as possible. I almost always am overcome by anxiety at some point in every trip (usually at the airport and on the airplane).
Cupcakes and humor.
I was once so independent compared to how I am now. I was once so social and active. Now, we spend a lot of energy to make sure that my life is as stress-free as possible to keep symptoms at a minimum. I stay at home and have very little stress or interactions during the day. I even limit what I post on social media to avoid confrontation with others (stress).
Cupcakes and humor.
I know my husband would enjoy socializing more, but I will rarely agree to go with him (isolating socially is a real symptom of schizophrenia and one that has increased in me every year). There is so much my husband enjoys that he has given up to help provide me with the kind of environment I need to give me the most symptom-free existence.
Cupcakes and humor.
For all the sacrifices my husband makes, I try to be a supportive partner when I can. Once a month my husband asks me to make cupcakes because he has taken it upon himself to celebrate the birthdays of everyone in his office. My husband reminds me on the last Monday of every month, “If you feel up to it tomorrow, can you please make cupcakes?” It wouldn’t matter if I were suffering from my worst symptoms I would try not to let him down by having the kitchen counter free of the little cakes that help him lift the morale of his coworkers. It is so little to ask of me. In the past six years, I have never once let him down.
Cupcakes and humor.
When I am comfortable, I make up random songs and sing them constantly. I am a terrible dancer, but I love to shake a little booty with absolutely no sense of rhythm while walking from one room to the other in the house. I love to tell a lively story about anything and everything. To make this simple, I love to see my husband break into a belly laugh or at least a big smile, and no one can do that to him the way I can. So yes, it is the simple ingredients that hold even strained marriages together. May I suggest Cupcakes and humor?
A few months ago I wrote a piece for a non-profit organization about living with schizophrenia. In the piece, I said that I thought writing was an important therapeutic tool: writing can help you document your symptoms so you can easily share them with your doctor. Writing can also help you work through difficult times, difficult memories, and help you gain valuable insight into yourself and your diagnosis.
After writing about the benefits of a writing practice, I wrote that eventually, I think that to be healthy people need to stop writing solely about their illness. The editors asked me to take that part of the essay out, stating that their readers almost all use writing to document their illnesses, and they might take offense to my suggestion that one can and should move beyond that.
I’m not talking about never writing about schizophrenia again. I plan to write about it as ideas come to me, but I feel like writing other stories, stories about my grandmother, my siblings, my childhood, things that are happening in the world, all of these things can be a necessary progression to living a happier and more fulfilling life.
I think a lot about my writing and I am sure other people who write think a lot about their writing, too. If my thoughts are almost always swirling around about the symptoms of my illness, it is my belief that more and more of my life will be that illness. If on the other hand, I create a love story, write down memories from childhood, or of my grandparents, then I believe my life will become richer and fuller as those thoughts take over part of my day and part of my life.
As advocates for people with a mental illness we are often trying to show people that we are more than our illness; I know I say it, and write it all the time. I think we need to live that in our creative lives as well and I think our mental health will increase because of it.
I like to read about people’s experiences involving their mental illnesses, but I also like to read about the type of flowers they like, their dream car, and whatever other things they care for or love. I even like to read fictional stories that they created out of their imaginations. This type of writing does a tremendous amount to normalize those of us living with a psychiatric diagnosis, and it also means we are thinking outside of our illness, and I think that is a sign of health and can lead to an experience of more happiness.
Happiness is not rare, but it isn’t always easy.